As the old adage goes, “nothing in life is to be feared; it is only to be understood.” For those living with chronic medical conditions like Jo’nette Jordan — a self-proclaimed Sickle Cell Warrior — this couldn’t be any more true. Having an informed understanding of Sickle Cell and the silent damage it causes, in addition to pain, keeps Jordan focused and motivated to proactively monitor her health as she faces this unpredictable disease.

Sickle cell disease (SCD) is a group of inherited red blood cell disorders, in which healthy, round red blood cells become hard, sticky and turn into crescent-shaped cells that look like a banana or a crescent moon. Once deformed, the unhealthy cells are known to both die early and have difficulty performing their main function: traveling through small blood vessels, carrying oxygen to the entire body. This in turn often causes anemia, a perpetual shortage of red blood cells, and clogging of the blood vessels, which can result in organ and tissue damage, pain episodes, infections or sometimes more serious complications requiring hospitalization.

“Sickle cell is ever-present in my life, [waiting] in anticipation for me to get too comfortable,” Jordan tells ESSENCE. “Then, when the slightest circumstance arises to remind me — too many hours sitting at my desk working, too many hours on my feet, too rigorous of a workout — the disease [can] rear its ugly head.”

While SCD affects roughly 100,000 Americans, it disproportionately occurs in individuals of sub- Saharan African descent. According to the Center for Disease Control and Prevention (CDC), about 1 out of every 365 African-American babies is born with Sickle Cell, and about 1 in 13 African-American babies is born with Sickle Cell trait (SCT).

Jordan grew up in Dublin, California, a neighboring suburb east of San Francisco, as the youngest of three children and during a time when few Black families called the predominantly white area home. “My older brother is now 50, and my older sister would have been 54. She died in 2008 of complications from sickle cell disease at the age of 42,” she shares.

“[As a child], not only did I have to quickly understand how to navigate an atmosphere full of people who often treated me as an outcast, I also had to understand how to [live] with an illness that would likely never affect anyone who looked like them — but most certainly would affect people who looked like me.”

Jordan’s experiences evolved into a desire to learn more about SCD, which included taking a proactive stance towards controlling her health. “I realized I have to take responsibility — I have to help manage my [SCD] and be aware of what triggers it,” she says. “I made sure I fully understood sickle cell disease, so that I could live the fullest life possible without it holding me back.”

For Jordan, staying physically active and living a full life go hand-in-hand. Moving from California to further her education in Atlanta, Georgia was a catalyst for this personal discovery. Having fun with aerobic activity between classes (while carefully monitoring her body’s response as recommended by her healthcare team) became a powerful way for her to help manage her SCD.

“In my 20s, it occurred to me that my body would take care of me as long as I took care of it,” she explains. “The more active I became, it seemed as though the more infrequent my sickle cell pain crises became. It made me feel normal.”

Years later, Jordan is still committed to moving. “I totally believe fitness is the key to longevity, not just for Sickle Cell Warriors, but anyone with or without a debilitating illness,” she says. “Increasing my heart rate at least three times per week helps my body move oxygen and blood to my muscles more efficiently.”

Until more research is done, Jordan’s advice to fellow Sickle Cell Warriors is steadfast: Always consult your doctor before you begin a new exercise plan. While no one knows your body as well as you do, she reminds us that a proactive partnership with your healthcare team can enable you to jointly develop a healthcare and exercise plan, so that you can explore opportunities to live that are worth taking.

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Edit Making Moves With Sickle Cell & Living Beyond A Diagnosis